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Archive for October, 2014

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Dyspraxia-My Experiences with Education and Medical Professionals

Somebody asked me recently if they could hear about my experiences with the medical profession and education professionals in regards to dyspraxia. While I have recently had some positive experiences, overall I have had more negative experiences then positive. dyspraxia is still not very well-known and most people have never heard of it. However people working in the areas of medicine and education should know more about it. It should be part of their training as people working in these areas are likely to come across Dyspraxia at some point in their careers. It is difficult enough to have to explain to the general population what dyspraxia is but when you have to explain it to people who really should have some idea it is completely frustrating.

Towards the end of last year my Doctor referred me to an Occupational Therapist for some assistance with the areas of life I find difficult. My Occupational Therapist did some tests to see what I struggled with. She then asked me how I got Dyspraxia( Developmental Co-ordination Disorder). I replied that I was born with it. She looked puzzled for a minute and then told me that she had never heard of anyone being born with dyspraxia.                                                                                                                                                                                                                         ”Really” I said picking my jaw up off the table. ‘Yes” she said ”I have only heard of people getting it after an accident or a stroke. I told her that I had my diagnosis at home to verify what I was saying. I took it in the next week  and she photo copied it because then she finally believed that what I was saying was indeed correct.

Just as I was getting used to this Occupational Therapist she left and I got a new one. This one informed me that she could re- wire my brain. I think I can take the liberty of speaking for everyone with DCD, Dyslexia etc , by saying that we would love to be able to have our brains rewired. What this OT fails to understand is that there is one major difference between people who have Dyspraxia from an accident or stroke and someone who is born with it. People who have had an accident or a stroke have the proper wiring there but it has been damaged. Where as someone born with dyspraxia didn’t have the correct wiring to start with. There is a vast difference between fixing broken wiring and creating new wiring. Try thinking of it as an electric circuit. If a wire is accidentally cut then to fix it you just need to repair the break in the broken wire. However if a wire is missing then you have to insert a whole new wire into the circuit. Needless to say she did not manage to rewire my brain.

About 3 years ago I had to go for a medical assessment. The nurse asked me to list all my medical conditions. When I said I had Dyspraxia he looked at me puzzled and said that he had never heard of it. I then had to explain what Dyspraxia was and how it affected me. He just sat there looking skeptical which is often the problem when you look normal.

My youngest son has some of the same issues as me and I suspect that he may have dyspraxia also . I got a referral on the public health for an assessment at the Child Health Clinic. The girl we saw had no idea. She didn’t check his balance or his gross motor skills. She then gave him one puzzle to do and said to me ”if he has what you have ( she couldn’t even remember the name of it) he wouldn’t be able to do that. ”No 2 people with dyspraxia are the same . Some of us can do things that others can’t eg some people with Dyspraxia can drive a car  while others ( like myself ) can’t.  You cannot decide that someone does or doesn’t have Dyspraxia on the basis of one puzzle.

On a positive  note I took my son to the GP on an unrelated matter. I couldn’t see my usual GP and my son is nervous of Doctors. While talking to my son to try to make him feel at ease, he picked up on some of my son’s issues . He asked my son questions and said he felt he may be Dyslexic. There are quite a number of similar issues between dyslexia and dyspraxia.  He gave him a referral but as the public health system is extremely slow we are still waiting for an assessment. There are some good doctors out there you just have to find them. This Doctor has a brother who is dyslexic so he picked up on the other issues that go with dyslexia apart from reading. Many of these apply to dyspraxia and also aspergers syndrome so it really needs a specialist for a diagnosis.

3 years ago I had an assessment done by the centre link Doctor to decide how much I need to work. This Doctor coded dyspraxia as being a psychological/psychiatric disorder. It is nothing of the sort. It is a learning disability of movement.  I was totally flabbergasted when I heard this.

Prior to this assessment I went to my GP to see if it was possible to get my diagnosis from Princess Margaret Hospital. It had been over 30 years so I wasnt sure if they would still have the records. It was clear from my Doctor’s attitude that she thought I was making it up because I didn’t want to work. I wanted to work, I just didn’t want to be sent to do jobs I wasn’t capable of doing.When my records came back she said to me well you do indeed have dyspraxia.

Sadly in my experience most teachers have never heard of dyspraxia. My son changed schools 3 years ago and it was the best thing I ever did. The headmistress of his old school had no understanding of special needs at all. I was told he lost things on purpose and that he was lazy. The fact that he lost items that were important to him didn’t seem to make any difference. I asked multiple times for my son to be allowed to leave his pencil-case at school and I would provide separate stationary for his homework. However they constantly made him take his pencil-case home and then punished him for forgetting it. He was even made to sit out at lunchtime for forgetting his lunch because they said he did it on purpose ( he was 7 at the time ).

While the majority of teachers I have spoken to have no idea about dyspraxia I have come across a couple of good ones. This year my son was still constantly loosing and forgetting things. I decided I had better go and speak to his teacher in order to explain that he was not being naughty and that we were waiting for an assessment. I was prepared to have to explain what dyspraxia is etc. I was pleasantly surprised to find that he knew all about dyspraxia . He has been very supportive of my son and has tried to implement strategies for him to learn in a way that he is able to. On parent teacher day he spent nearly an hour talking to me about my son and did not try to rush me out the door. I am very pleased that my son has this teacher and I am hoping he will have him again next year.

In 2010 I trained as an Education Assistant. I thought I could help children with their maths and english. However when it came to the practical assessment in a school I realised that it is not a very practical career for someone with dyspraxia. Most Education Assistants work in classes with younger children where a lot of cutting out and drawing is involved. I was very lucky because my mentor teacher knew and understood about dyspraxia. There was a child in her class with dyspraxia and she was really good at being aware of this childs issues. She was also really good with me, She pushed me a little to try things I didn’t think I could do but was totally understanding if I took longer then I should or didn’t get it perfect.

At the beginning of this year I decided to study Information technology one day a week at TAFE.  On the first day our lecturer asked us to write a little about ourselves. I decided to mention my dyspraxia as I knew I was sure to have difficulties. I was expecting to have to explain what Dyspraxia was. However I was completely surprised the next week when she told me she knew someone with dyspraxia and understood the challenges I may have.My lecturer was great she tidied my USB up twice for me  and reminded me to save things in the right place from the start.She suggested to me that I contact Student Services. The lady from Student Services also knew and understood about dyspraxia. I didn’t get asked the usual questions about what it is and how it affects me. I was given extra time in exams which was great as I couldn’t type as fast as a neuro-typical person. I also received extra tutoring after class.

Though I have definitely seen improvement in the awareness and understanding of dyspraxia, we still have a long way to go.